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crazywoman
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 Posted: Apr Fri 16, 2010 12:39 am Post subject: |
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Thanks for the update Anne. I just found it on her site, was gonna post it if you (or someone else) hadn't.
Yes Linda Sue, glad that Jerry is getting more exercise now, and back on solid food. Some hospitals will let you bring food to the patients.
Hope the swelling in the feet goes down soon.
Still praying for you both.
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LindaSue
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| Posted: Apr Sat 17, 2010 11:02 am Post subject: |
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The doctor wants Jerry to eat anything he can get his hands on so food from home is fine. However, it's not very practical to bring it from home since I don't know if he'll be hungry or have just eaten when I get there and there's no way for him to store food there for later. There's a fridge on the floor but they only allow unopened packaged food in it. I'm also not really doing much cooking at home right now since it's just me and our son. Nick is rarely home so there's not much point in cooking for him either. I may run down to McDonald's and get something for Jerry when he's in the mood for it. I go right past it in the hall on the way to the elevator that goes up to Jerry's floor. There's not much worth buying from the hospital cafeteria and it's very expensive. McDonald's isn't the greatest food but it's no worse than what they're feeding him and he said he'd like a burger, fries and chocolate shake next time I come.
Even though Jerry is back on solid food they are still tube-feeding him through his nose as well.
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crazywoman
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| Posted: Apr Sat 17, 2010 11:15 am Post subject: |
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Hi Linda Sue!!
Yeah, I actually knew that it might be quite hard for you to bring him food in, in your situation. It was just kind of a thought. I know that you have to travel a pretty good ways just to get there. It's not a matter of a few blocks. And I also fully understand your not cooking much right now!
In Jerry's case, I can also fully understand your going down & getting him McDonalds if he is hungry & wants it. It's good that they have one right there.
We are pretty fortunate here in that our hospital's cafeteria food tho not the greatest, isn't as high priced as some. But actually, when my husband was in the hospital recently, all I really paid much attention to in there was the salads. They have a pretty good salad bar, and you can get a good salad pretty reasonable. I really didn't pay that much attention to the prices of other things, as most were sandwiches, or pasta dishes, and etc that were too high carb for me to want to eat. I just ate salads when I was there with him & need to eat. His stays were short, and he really wasn't eating much while he was there. Mostly liquid diets. And he really didn't have much of an appetite anyway, so I'm not sure how the food is there. My daughter has been in there several times in the past, but I can't remember now what foods they served, and it has been a few years now (thankfully!).
Hang in there, get rest when you can!!! I know how tiring and stressful this is for you. Hope Jerry will start a road to recovery soon. Look forward to hearing that he is doing MUCH better.
We're still praying for you both!
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LindaSue
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| Posted: Apr Sun 18, 2010 2:28 pm Post subject: |
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Jerry asked me to buy him a fish sandwich and fries from McDonald's yesterday and it didn't go over too well. I think he realized that their food really doesn't taste all that great after not having it for so long. He ate one fry and nearly gagged and he took only one bite of the fish sandwich and threw the rest away. He said it tasted terrible. I took a bite of the fish and had to agree with him. I think it was mainly the tartar sauce that was so nasty. It tasted like paint, LOL. We both agreed that there's no point in me bringing him food anymore and neither of us wants to have McDonald's again anytime soon. I got two bunless double cheeseburgers for myself and the cheese was so salty I could hardly stand to eat it. Oh well. We both learned a lesson yesterday. It will be nice once Jerry comes home and we can both eat real, home-cooked food again.
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crazywoman
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| Posted: Apr Sun 18, 2010 7:00 pm Post subject: |
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Sorry that didn't work out. But I totally understand. I never was a McDonald's fan anyway, and after not eating that stuff for awhile, what I do try to get when in a bind doesn't taste good at all.
Jerry may be experiencing something similar to what my husband went thru after his surgeries (which weren't near the surgery that Jerry had). It was a few weeks before anything tasted good to him. (not talking about the fish sandwich & fries really, but food in general for him right now) My father-in-law had the same thing happen to him after his open heart surgery. Nothing (or very little) tasted good to him for a long time. His whole tastes have changed. My husband's tastes are back to normal (his normal) now I think.
I hope by the time Jerry gets to go home, his tastes will be back on track, and he can enjoy your home cooking!!! And hope that can be soon. Hope he starts to progress well very soon.
Send him our well wishes!!! Still lots of prayers going up for you both!
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LindaSue
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| Posted: Apr Mon 19, 2010 12:59 pm Post subject: |
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You're probably right, Billie. I bet that the meds he's on can affect his sense of taste as well. On top of that, Jerry has had very little sense of taste for many years for some reason and nothing to do with his liver problem.
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crazywoman
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| Posted: Apr Wed 21, 2010 11:38 pm Post subject: update 4/21/10 |
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| Quote: | 4/21/10: When Nick and I went to see Jerry Monday night, he told us that they were thinking about sending him home on Thursday. I thought that was a crazy idea because Jerry still can't get out of bed by himself and he's still not doing much walking yet. He can't bathe himself or use the bathroom either. For the most part, other than short walks, his physical therapy has been sitting in his chair for several hours per day. After hearing this, I assumed that the doctors had decided that his progress was going so slowly that they might as well just send him home to get his strength back at his own pace or that Blue Cross had gotten tired of paying the bill. Sending Jerry home in his current condition would have been a big burden on my shoulders because I'd have to do everything for him. I'd also worry that he might fall and I wouldn't be able to get him back up. It just made no sense to me that they'd do this since there is a sign on the wall in his room that says patients don't go home until they can do six laps around the ward. I had also been told by the transplant social worker that in order to go home, Jerry must be able to do everything for himself and that we weren't going to be allowed to help him.
Anyway, the good news is that I found out today that they've decided not to send Jerry home yet. Instead he's going to be put in the 3-hour per day physical therapy program. We'd been hoping that he would be allowed to get in that program but up until now the doctors didn't think that he'd ever be strong enough to handle it and they were talking about moving him to a long-term rehab hospital. Hearing that they weren't even going to do that and were just going to send him home was quite a shock. They'll be moving him to a new room today. Jerry said that it will be a private room on a different floor of the hospital.
Jerry said that he's swelled up really bad in his belly and lower body just since we last saw him a day ago. The doctor said that there's no point in removing the fluid from his belly again because it would just come back by the next day and there's always a risk of infection from the procedure. They seem to think that the fluid problem will eventually go away on its own. Obviously the diuretics aren't helping or it wouldn't be getting worse. Maybe once he starts doing some strenuous exercise it will help reduce the fluid build-up.
I asked Jerry the other day if the doctor has said why he's continuing to have so many of the same symptoms that he had before the transplant and he said that the doctor told him that he'll continue to have some of them for several months until things in his body work themselves out and get back to functioning normally. He's also still on oxygen because he said he still sometimes has trouble catching his breath, especially when he first wakes up. |
Linda, I hope the move to the new room and different ward will be good for him, and he will get more physical therapy, and walks in. Hope the fluid buildup will stop soon!
I guess in re-reading your post, the room change is the 3 hour a day rehab program. Hope it goes well!!!
Still lifting him (and you up) in prayer!
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LindaSue
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| Posted: Apr Thu 22, 2010 12:40 pm Post subject: |
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When I called Jerry a little while ago they hadn't moved him yet. They were waiting to get approval from Blue Cross first. Nick and I will probably go visit Jerry as soon as we hear from him that he's in his new room and what the new visiting hours are. Hopefully they'll be the same as on the 12th floor. We could visit 24/7 there. I'm wondering if we'll be allowed to watch his PT or if we'll have to time our visits around it. He'll have two hours in the morning and another hour in the afternoon. I don't know if they do PT on the weekends but Jerry seemed to think they do.
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crazywoman
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| Posted: Apr Sat 24, 2010 11:12 pm Post subject: |
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| Quote: | # 4/23/10: I was pleasantly surprised to learn something about Jerry's Blue Cross insurance the other day that I hadn't noticed in the manual before. There is a limit of $650 in copays that we will have to pay for the year (which I assume doesn't include prescription copays). Since Jerry has already paid $115 in copays so far this year for doctor visits, we will only owe another $535 of the remaining copays for his two hospital stays ($250 each) and ambulance ride ($100). After that, Jerry won't have to pay anything when he goes to the doctor or if he ends up in the hospital again, etc.
They finally got around to moving Jerry to his new room around 2:00 yesterday. Well, it actually took them three tries to get a room for him. When they got him to the first room he was assigned to there was no bed in it so they moved him to another room. A little while later he called to say that they'd moved him to yet another room that had a longer bed (he's 6'2" tall). The visiting hours on that floor are 24/7 but Jerry said that they'd prefer that we don't come to visit him until after 3:00 in the afternoon during the week. They said that we can come at any time on the weekends so I guess they don't do PT on weekends. The next time I go to visit Jerry I'm supposed to bring some street clothes and shoes for him to do his PT in.
I think it would be nice if the physical therapists would let me come once during the day so that I can see what kinds of things they're doing for Jerry. I can't think of any reason that they wouldn't want me to see what they're doing. When I called Jerry today he said they told him there's a good chance that he could come home mid to late next week. I'm not going to hold my breath though because they seem to change their minds a lot at that hospital. Today they mainly just evaluated Jerry's condition and had him do some walking with a walker. He was going to have two 30-minute sessions this afternoon but he didn't know what they'd have him doing. He said that there is a gym on that floor but he hasn't seen it yet. |
That is great news about the maximum on the co-pay. We found out that tho there is a maximum on how much we pay after the deductible, that doesn't include the co-pay. And the co-pay isn't included in the deductibles. so each time we go to a doctor or into the hospital there is another co-pay. The hospital co-pay is $300. But all in all our insurance seems to be pretty good. (Bad thing is our family doc isn't in their network, so it doesn't pay as much, and they have a separate deductible & maximum.) But we still (even with my DH's 2 surgeries & hospital stays) don't have near the hospital/doctor bills you guys have.
I am sure glad for you that you have the maximum limit on the co-pays!
Hope Jerry will start to progress much faster now. Hope he will be feeling much better & lots stronger Very soon! Hope you can start getting some rest too Linda Sue!! Huggzzzzz
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LindaSue
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| Posted: Apr Mon 26, 2010 10:58 am Post subject: |
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Billie, my husband's insurance is an HMO so there are no deductibles. He had traditional insurance last year, with a maximum of $2,500 out-of-pocket for the year, but he still had to pay a copay when he went to see the doctor even after the max was reached. There were no copays for hospital stays though. Until I read about the maximum in copays with his HMO I was thinking that we could easily spend over $2,500 in copays had Jerry not gotten his transplant so quickly. Turns out that wouldn't have happened. Of course we're going to get soaked paying for his anti-rejection med if we have to get it through Blue Cross. It will cost $400 per month just for the Prograf. I haven't heard back from the pharmaceutical company about their assistance program yet or from the VA. Hopefully one or the other will come through for us so we can either get the Prograf for free or pay an $8.00 copay for each of his prescriptions, including the Prograf, through the VA.
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crazywoman
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| Posted: Apr Thu 29, 2010 1:23 am Post subject: |
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Haven't been online much the last couple of days, and just now found this update.
| Quote: | # 4/26/10: It turns out that they don't do any PT at the hospital on Saturdays but they do on Sundays. When I got to the hospital yesterday morning I discovered that Jerry wasn't in his room. He was out walking the hallway with a walker. After that, the therapist took him to the "gym" for some sitting and standing exercises. Since he was the only patient in the gym she let me stay and watch. He mostly did a variety of leg lifts while sitting and standing. While doing the standing exercises, he used a tall table for support. Jerry did well with all of them except for the heel-lifts. He couldn't lift his heels up more than a fraction of an inch off the floor. After his PT session, Jerry wheeled himself back to his room in a wheelchair and he seemed to move pretty fast.
Jerry didn't have any IV's, oxygen or his feeding tube connected yesterday. He said that the doctor told him that he won't have to be tube fed as long as he drinks at least four of those bottled nutritional drinks per day plus his regular food. I don't think that he'll be able to do it though. He only managed to eat a bowl of soup and half of a roast beef sandwich for lunch and was too full for a bottled drink afterward.
Jerry's legs are very puffed up with fluid but his belly doesn't seem to be getting nearly as huge as it had before. His blood sugar was pretty good in the afternoon. It was 109 before lunch and the nurse said it had been the same earlier in the morning. However, I have no idea how high it would actually be if they weren't giving him the all-day insulin every day. At least he's not getting numbers above 150 now.
Before I got there, they had Jerry take a shower for the first time in over a month. They have a chair in the bathtub for him to sit on while bathing. It just occurred to me that yesterday was the first day that Jerry wasn't lying in the bed at all while I was there. He sat in the wheelchair to eat his lunch.
# 4/26/10 (later): I have some great news. UPS dropped off a package today with a 90-day supply of Jerry's anti-rejection pills. There wasn't much information enclosed in the box so I called the toll-free number. They said that Jerry is enrolled to get Prograf free for one year. CVS will send the shipments every three months. Shortly before the year is up, Astellas will call Jerry and he will go through the enrollment process again to see if he qualifies for another free year of Prograf. Thank goodness that we won't have to deal with Blue Cross and their outrageous $400 monthly copay for Prograf. If the VA benefits come through Jerry might be able to get all of his other meds more cheaply too.
Also, when I called Jerry to tell him that the Prograf had come, he mentioned that he'll probably be in the hospital for a while longer than he thought the other day. This morning the surgeon said that he might be there at least a couple more weeks. Jerry said that he's not feeling very well today. He's been having some diarrhea and not eating much.
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Linda Sue, Glad that Jerry seem to be doing better, but sorry he wasn't feeling well later on. Hope he is better now.
What wonderful news about the medication!!! Praise the Lord. Hopefully he will get the VA benefits also.
Keeping you in my prayers!
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crazywoman
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| Posted: May Thu 06, 2010 2:33 am Post subject: |
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I've not been online much the last couple of days, and been busy. Got behind on the updates. Here are the last 2 that LindaSue posted.
| Quote: | # 5/2/10: When I got to the hospital today they were giving Jerry two units of blood because they said that his count was low. I have no idea what might have caused that. The nurse said that he didn't appear to have any internal bleeding. Now I wonder if they'll still send him home on Thursday. Jerry didn't have any physical therapy today. Apparently the only reason they did it last Sunday was to get him caught up. They don't normally do PT on the weekends. They are no longer tube-feeding Jerry through his nose. He said that the tube came out accidentally a couple days ago while he was in the shower so they decided not to put it back in.
Jerry told me that Astellas delivered a free month's supply of Prograf to the hospital for us to take with us when Jerry goes home. I guess they must have sent it before they knew for sure that we'd be accepted in the assistance program.
# 5/4/10: Jerry is still scheduled to come home from the hospital on Thursday. Our son and I will have to be at the hospital at 10:00 that morning to attend a class on caring for Jerry once he gets home. They're also going to send us home with his first month's worth of meds (20 of them!!!) which will cost us a whopping $250 per month! Thank goodness that Jerry is going to get the Prograf for free or we'd have to pay another $400 per month for that. The therapist at the hospital is making arrangements to have a walker and a commode for Jerry to use at home (Blue Cross will cover it). I've ordered a shower chair from Walmart because the insurance won't cover that and the one that he could get through the hospital would cost $65 instead of $30 for a not-quite-as-fancy one. I also called our landlord about having grab bars installed in the bathtubs. It looks like Jerry will have to go to physical therapy twice a week and hopefully they can arrange for him to go to some place close to home. I have a feeling that I'll be doing a heck of a lot of driving for a while taking Jerry to PT, doctor's appointments and for blood work. This morning I noticed that one of my tires was almost flat. I got it repaired for no charge and I'm VERY relieved that it didn't happen driving on the freeway to or from the hospital. Hopefully my old car will be able to take all the driving I'll be doing. While it was in the shop this morning I had the mechanic also check the transmission fluid which has been slowly leaking for as long as I've had my car. He said it was fine. Hopefully it won't leak too much between now and when Jerry is able to check the fluid himself again. He told me this morning that he was able to get out of bed on his own with his walker to use the bathroom and get washed up. Just two days ago he wasn't able to do that by himself.
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Linda, I'm glad that Jerry is doing better. Wish they knew why his blood was low tho. Hopefully he isn't actually losing blood now, and will start to gain strength.
Glad you found that tire in time to get it fixed, and was able to have the fluid checked, and it was OK!
I continue to keep you both in my prayers.
Hugs
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crazywoman
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| Posted: May Sun 09, 2010 5:18 pm Post subject: Update 5/8/10 JERRY'S HOME!!! |
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Just found this. Great news!!!!
| Quote: | 5/8/10: Jerry is finally home! Nick and I had to be at the hospital Thursday morning for some training before Jerry could go home. We met with the diabetes educator, the transplant team pharmacist, the dietitian and the after-transplant coordinator throughout the day. The dietitian said Jerry can eat anything he wants at home, but he should avoid buffet restaurants and organic produce which can have more "bugs" and bacteria, etc. We took a break for lunch and wheeled Jerry across the street from the hospital to a Subway restaurant. He was so tickled to be outside after almost a month and a half. It was a gorgeous day that day too. Before we left, they took his staples out but he later realized that one got left behind that was hidden under his skin. He'll let the doctor know about it when he sees him next Monday.
Jerry is having mobility problems right now because he's so huge due to fluid retention. He's nearly as big as he was last fall. His legs and feet are very big but he's mostly carrying a huge amount of fluid in his belly and behind. It's hard for him to get up from sitting because he has to lift about 40-50 pounds of water around his middle. He weighs about 190 but he still has no fat on his body. They know that he's having fluid problems right now so they said it's alright for me to transport him in his wheelchair for now, at least when we go to doctor's appointments and things like that. He's pretty nimble once he's on his feet and using his walker though. He goes to the bathroom by himself and hasn't asked me for help with that at all so far. I've only had to hoist him up two or three times; once from his bed and twice to get him out of the car. Jerry is happy with the commode that the hospital ordered for him. The walker is working out pretty well too except that it's too wide to fit through the doorways of our house. He has to go through them sideways. It's kind of strange that his transport chair can go through most of the doorways (except for the bathroom door) but the walker is too wide.
Jerry takes 10 units of long-acting insulin every morning no matter what his blood sugar level is but he hasn't needed any extra insulin shots throughout the day so far since he's been home. His blood sugar has been in the range of about 70-103 mg/dL most times when he checks it before his meals. There were times in the hospital when it had gone as high as the 170's. They told him to take an insulin shot when his BS goes above 150 and so far that hasn't happened. Jerry has charts for keeping track of his blood sugar, blood pressure, weight and temperature throughout the day. He's to take those charts with him whenever he sees the doctor.
One problem that is bothering Jerry is that the backs of his hands and forearms are constantly bleeding or bruising because his skin has gotten so thin. Just bumping his hand causes a bleed.
We had to go downtown for labs very early Friday morning. Whenever Jerry goes for blood work they said they will call him later to let him know if his Prograf dose or other meds need to be adjusted. Friday afternoon they called and told him to lower his Prograf dosage by one pill. He was taking 7 pills twice a day and now he's on 6 pills twice a day. We will have to go downtown for labs and doctor visits twice a week for a while plus he'll have physical therapy twice a week for about a month. We'll get that set up next week. The transplant pharmacist is checking into getting Jerry's prescriptions set up through the VA but we haven't heard back from her about that yet. |
LindaSue, I am so happy that Jerry is well enough to go home. Sounds like other than the fluid buildup, he is doing really well now. Praise The Lord!!!
Hope that fluid will start going down soon. And sounds like your good home cookin is doing well for him to with his blood sugar!
When you say you have to take him downtown, I'm assuming you mean Houston. ?? I don't envy you that in the least. My sister lived in Houston for 3o some odd years, and I used to live So East of Houston for a few years, and had to go into Houston for things every so often., besides going to visit her. I hate having to drive in Houston.
Hope the VA prescriptions go thru and soon.
Take care of Jerry, and be sure to also take care of yourself!! Glad you have Nick to help you out, and hope he helps out a lot. Hopefully soon Jerry will be able to do most of it himself.
Hugs & prayers!!! ♥
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crazywoman
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| Posted: May Sat 15, 2010 8:33 pm Post subject: Update 5/11 |
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| Quote: | 5/11/10: I'm really getting a good workout pushing Jerry in his wheelchair at the hospital when we go for his doctor visits and labs. We've been parking in the garage by St. Luke's and taking the sky bridge from there to the O'Quinn building and then another sky bridge from there to the Baylor building where Jerry's clinic is. In all, we have to use three different sky bridges because there's also one going from the parking garage over to St. Luke's. It's really working out my legs because they all go up hill part of the way. However, it looks like most of Jerry's future clinic appointments and lab work will be done at St. Luke's starting next week so I won't get quite as much of a workout pushing Jerry in the wheelchair anymore.
It looks like Jerry might only need to go downtown once a week now unless they decide that he needs to come in for more labs based on his previous lab results. After they looked over Jerry's daily blood sugar chart on Monday, they decided to lower the dose of his daily insulin from 10 units to 8 because his numbers had been so good since he came home. They also lowered his magnesium. They think that the magnesium might be causing his loose stools. Anyway, Jerry's doctor visits will be every Monday for a while and extra trips just for labs will be on an as-needed basis.
Unfortunately, Jerry's good blood sugar readings didn't last. Since lowering the daily insulin dose this morning, Jerry's reading at lunch time today was in the 190's and then it was 209 before supper. He never even had readings that high when he was still in the hospital. Apparently lowering his all-day insulin dosage wasn't such a great idea. On the other hand, they called today and told Jerry to lower his Prednisone a bit so maybe the numbers will start to come down again since it's the Prednisone that causes the diabetes. They want him to come back for more labs on Thursday to check to see how the lower dose of Prednisone is working out.
As far as mobility, Jerry had a very good day today and didn't use his walker at all to get around the house. His appetite is also increasing. He ate three big meals today and also wanted to snack all day long. Maybe his out of whack blood sugar is making him hungrier. |
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crazywoman
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| Posted: May Sat 15, 2010 10:08 pm Post subject: |
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LindaSue, you are certainly getting your exercise!! At least for now.
That will certainly be good if you can cut back on your visits to the doctors downtown!! Magnesium can certainly do that. My MIL can't tolerate hardly any Magnesium. Hope cutting it back helps him. Sorry the he couldn't continue the lowered insulin. Hope they can continue the lower Prednisone.
Glad to hear that he is feeling better, and getting stronger! Glad his appetite is back. Now if he can just put back on the needed weight, but then hold that.
Huggzzzzzzzzz
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